Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
Referring to the subject of this thread and peoples interest or inactivity, it is a hard one to fathom. Since being diagnosed I have realised that there are definitely two different reactions, one try to ignore it and only receive as little information as necessary to manage the treatment and recovery and the second to have as much information to be able to make educated decisions, also receiving that support that talking with others in the same situation can give to you. I consider myself to be in the second but each person has their own methods for coping.
It is interesting because over the recent weeks there have been two fantastic opportunities for people offered by the centre, a Mens' Cancer day with various consultants and therapists taking part, all for free and great lunch included and a five week series of talks called Knowing Cancer - also free. Disappointingly the uptake for the mens group was surprisingly low ...normally they are very well attended and the series of talks only so-so. The talks are presented by Anne who was an oncology nurse and is a cancer survivor herself. She is so down to earth and explains everything so clearly whilst removing the fear from many of the topics.
I wonder is it because it appears that cancer is so prevalent?..... some wonder epidemic proportions, with lots of publicity that 1 in 3 people will experience cancer! Do people worry that by knowing about it or thinking about it that it will happen to them. I know that sometimes whilst going through treatment it felt like that some people thought that cancer was contagious and kept away incase they got it too! I do think that the fear factor does come into play around the subject of cancer and perhaps the feeling with survivors that they just need to move on. Don't think or talk about it or it may come back. For me I prefer to know as much as I can and then I can also offer support to people just starting on treatment.I suppose, too that because I have had a few long term after effects it is difficult to put it out of my head and life.
During the week we went on a mystery tour from the centre and went to the Dail ( parliament) and then to the Arras where we had tea with President Higgins and his wife. I have met him many times before in my past life as a union activist as he is a staunch trade unionist and delivered many rousing and inspirational speeches at our regional conferences in the west of Ireland. He is an academic and was a professor at Galway University. i only wish that we could have spoken with the Minister for Health at the Dail but he was busy launching the new Childrens Hospital. it seemed a waste to be there and not.
The centre is as busy as ever and another young woman with TNBC visited recently. That makes 4 of us now. The population of Clare is between 97000 and 100000 and so I don't know how that compares statistically with other places.
I have my appointment with the pain clinic on Monday and am also waiting for an appointment with a dermatologist to check out the skin reaction on my breast.
Oskar is growing like a little sapling tree and getting taller. He will be 4 in November. We will not see him for a while because we are going to America on the 3rd October.
Leigh is home and we spent yesterday clothes shopping which can be difficult as Leigh is so broad on the shoulders and womens clothes are not. we are concerned that his Aspergers support worker is also away at the same time as us but will try to put a network in place .
Leigh is supporting a protest at the Asylum seekers hostel in Cork and they have at last been given permission to cook for themselves an important need for them. She has been entertaining the children and doing artwork too. This evening there is a rally and she is returning to Cork to organise musicians to play at it. I suppose as Leigh feels that she is marginalised in society as a transgender woman there is a need to offer support to others in the same boat. I hope she stays safe.
I too was following the Scottish referendum because Mum was from a small town near Glasgow.It appears that the government have reneiged on their committments. I wonder will there be another referendum in a few years. They have lost their driving force in Alex Salmond but maybe the Yes camp can work on the economic and business agenda. The concern about the withdrawal of businesses was an influencing factor in the No vote.
Sorry that this is so long and all over the place. I should post as things come to mind, but sometimes they seem irrelevant.
Wishing everyone in treatment that all is as good as it can be. For everyone else, today I am so glad and fortunate to be here. I hope that you have days like that too
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Hello Mary,
I was glad to know
that everything looks well following your appointment with your
oncologist. At least she seems to be taking good care of you. I do
hope you will not have to wait too long before getting an MRI scan,
as waiting for scans is always an anxious time.I was glad to know,
also, that your various pains are not quite as bad as they were. I
would think that any existing pain before chemotherapy would not be
helped by the chemotherapy and would probably be made worse. I think
they need to find a way of preventing the neuropathy in the hands and
feet from the taxanes. Women posting say they have had ice to help
it, but I am wondering whether patients are made aware of this before
they start the chemotherapy. I am not convinced there is anything to
cure the neuropathy once it has happened. It is damage to the nerve
endings and I do not think this can be cured. I trust my oncologist
and she has assured me there is no cure, and this has been backed up
by my GP and two podiatrists. I just bathe my feet regularly in sea
salt, bicarbonate of soda, Epsom salts or a mixture of all of them.
In addition to this, I moisturise the soles of my feet every day with
a good moisturiser, unperfumed.I think you are
right about arthritis being aggravated by chemotherapy. If
chemotherapy can cause flare ups of gout, I would think it can cause
flare ups of arthritic pain. Before my diagnosis of breast cancer and
treatment, I had nothing wrong with me and now I have osteoporosis
and neuropathy. It seems obvious that breast cancer treatment affects
all our living tissues. My eyebrows have never grown back to how they
were before although they have grown back.Do you think that
the neuropathy in the feet caused by taxanes is the same neuropathy
that is caused by diabetes and do we have the same risks with it that
diabetics have? I must remember to ask my oncologist about this when
I next see her in May, which should be my last appointment if nothing
goes wrong, as she told me I would be able to be discharged as June
2015 will mark ten years since my diagnosis. That is still nine
months away, so I cannot take anything for granted.I agree with you
that Michael is a great source of information. If you look up the
Janette Collins Foundation you will read her story and what happened
to her.I was interested to
know that you are on Facebook but not on Twitter. Both of them seem
to be a way of life now. I am amazed at the number of people I see
walking around here staring at their phones. They seem to be
completely engrossed and not aware of their surroundings.Sending you fond
thoughts.Sylvia xxxx
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Hello Michael,
I do not take any
other therapies on a regular basis but I do take some from time to
time. My constant companions are green tea and bitter apricot
kernels. I think we have to be careful not to mix up complementary
therapies and alternative therapies. My understanding of
complementary therapies are things such as aromatherapy, reflexology,
Indian head massage and counselling. I had just one session of one to
one counselling at the FORCE cancer centre in the grounds of my
hospital. It was useful but I did not feel the need to go again.
Towards the end of my treatment my breast cancer care nurse asked me
to join a group called Moving On. Raymond and I went to the first one
but decided it was not for us. I though this group dwelt too much on
their cancers and not enough on getting back a normal life and trying
to get in depth information about causes of the cancer and how to
prevent cancer.As for homoeopathy
and a consultation with a private consultant advising on nutrition
and non-orthodox ways of dealing with cancer, I did find these
helpful. I had just one appointment with the private consultant and
came back with quite a lot of printed paperwork. Much of the food
advice I had been following most of my life anyway, but I did cut out
all meat and dairy products, which already figured very little in my
diet. It was through her that I started on the bitter apricot
kernels, even before I started my treatment and I have never stopped
taking them. I was already on the green tea from reading about and I
still have about six mugs of it a day.As for the
homoeopathy I stayed with the consultant from 2005, when diagnosed,
until about 2010, when she thought I was ready to be discharged. In
2005 she started me on anti-cancer immune-boosting powders, which I
took for a while, and then added oral Iscador which I took from 2005
for about three years and then had a rest from it. This is also an
immune booster and used in Germany for cancer treatment. When I
wanted to go back on it, the PCT here had stopped funding for
homoeopathy and so I did not have it. In addition, Devon no longer
came under the Bristol Homoeopathic Hospital. I had homoeopathic
medicine for each part of my treatment, for surgery, for chemotherapy
and for radiotherapy. I was fine through all of this.The homoeopathic
consultant saw me regularly in the Bristol Hospital or I had
telephone consultations. The appointments with her were quite long
and very useful and I felt that she really got to know me and how I
ticked. After every appointment she wrote to my breast cancer surgeon
to let her know what was going on with me under her care, so my
treatment in Bristol was not really separate from my treatment in
Exeter. The two consultants knew each other and the one in Exeter did
refer patients to the one in Bristol.I know I have no
proof of how much all this helped me, but I am here to tell the tale.
I must emphasise that the alternative doctors did say they could help
as an adjunct but that I needed to have the orthodox treatment and I
followed that advice.Before I had my
appointments in Bristol with these two consultants I had found out
through icon magazine about a herbalist, a well known one in Sussex,
and I had written to him. He gave me wormwood tablets and astragalus
powder. We spoke on the phone and exchanged a few letters.
Unfortunately he is now deceased but there is someone who carries on.
Once I started the orthodox treatment I did not continue with him,
because I think he preferred to treat patients who had not had
orthodox treatment. From time to time, even now, I do take astragalus
capsules as an immune booster. I get them from Holland and Barrett.That is my story,
Michael. I had a lump, I eventually went to see my GP and then a
consultant and was diagnosed June 20th 2005 with
non-hormonal breast cancer, was told the prognosis was poor because
tamoxifen was no good to me and that I would need chemotherapy,
surgery, and radiotherapy in that order. Initially I could not face
the treatment and did not return to the hospital until October with a
pre-arranged appointment with the breast cancer consultant surgeon.
In the meantime I went through the other appointments to rule out
alternatives to orthodox treatment. When I went in October I was
psychologically prepared for the orthodox treatment and went through
it with few problems.I would NOT advise
others to do this. If you find a lump, get it seen, find out what
kind of cancer it is, size of tumour, receptor status, grade and
treatment. If it is large you will probably start with chemotherapy,
then surgery and then radiotherapy.I shall finish this
post a bit later as I have something I must do at 11:30am.Best wishes.
Sylvia
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Hello again Michael,
I was interested in
what you said about Janette's family and breast cancer. I was
interested to know that Janette had a great aunt who had had breast
cancer, so, as you say, we have another example of the skipping a
generation theory. I have no idea where this theory comes from or
whether there is any research on it. I know I was quite shocked when
my elderly friend came out with this when we were talking about my
maternal grandmother.It is difficult to
generalise about these things. I know that when it comes to asking
whether you can have genetic testing, the criteria seem to be quite
rigid. I did ask about it and did obtain an appointment with a
genetic nurse at my hospital in Exeter. It was a 45 minute
appointment during which she asked a lot of questions and then
decided that she would not refer me to a genetic counsellor. She
based this on my age at diagnosis, telling me that it is usually much
younger women who are diagnosed with BRCA1, BRCA2 faulty genes. She
said that were there genetics involved in my family I would have had
breast cancer at a much younger age and so would my maternal
grandmother. I think they are also most interested in closer family
members, such as mother, daughter, sister.We also have to
remember that breast cancer does not have to come through female
members of a family. It could come from males to females.Thank you for the
information about ACOR and that you do not need to join to use the
resources. I was wondering whether you have clicked on breast cancer
there, gone through the various headings and found anything that we
do not already know or have not covered on the thread.I was glad to see
Saturday arrive. It has been a busy week and I have not yet got back
to reading the latest book by Owen Jones, The Establishment and how
they get away with it. It is quite an eye-opener. It is his second
book. The first one was Chavs, the demonisation of the working class.
I have also got Please, Mr Postman, A Memoir by Alan Johnson. I read
the first volume of this, This Boy, about his childhood in London.It is a bit cooler
here in Exmouth, but still no rain.That is about all
for now. I hope you have a good weekend.Sylvia
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Hello adagio,
I was glad to know
you had survived the wedding and I am not surprised you are totally
exhausted after two weddings in six weeks. It is not something I
shall ever experience as I have no children. I can understand that
you need to catch up on sleep before you get your home back to
normal. I was glad to know that you are feeling well.I think we all go
off our diets from time to time and it is probably best not to worry
about it, as long as we are living healthily most of the time.I would think the
supplements would have helped you through all of this.I was so sorry to
read that a dear friend of yours had died of TNBC that had
metastasised to the brain. It is so awful that, with all the money
that is being poured into cancer research etc. that people are still
dying from it. My friend and neighbour with triple positive
metastatic breast cancer to the spine, lungs and liver survived just
one week after being told there was nothing else they could do for
her and she had just three months to live. She had survived
metastatic breast cancer for a couple of years but she had been on
chemotherapy, radiotherapy and monoclonal antibodies for most of that
time and she was so thin. I think that it is the drugs that kill you
in the end and not the cancer. I think the drugs just destroy your
body.It makes us all
realise we just have to live the day and not think too much about the
future.This is what I have
been wondering lately. We read quite often now that cancer is part of
our body. It is not an alien that has invaded our body, so I am
asking myself why is it there? Most of what makes up our body is
there for a purpose and serves a function, but cancer serves no
purpose or function that I can see. In the body it is a constant
threat and in constant battle with our immune system. Why does the
immune system have to be challenged in this way? Is it Nature's way
of trying to limit the size of the population of the planet?What are you going
to be doing with your days now?Fond thoughts.
Sylvia xxxx
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Hello linali
(Lindsay),I have just read
your very interesting post and I shall answer it a bit later on
today. I have been doing quite a few posts this morning. I had a
short break to watch Dateline London on the BBC News 24 channel. It
is about current affairs and has a panel of four foreign and British
journalists and a moderator. It is only half an hour but should be
more.See you later.
Sylvia xxxx
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Hello everyone,
I just wanted to
wish you all a good weekend.I was wondering if
everything is OK with Normandee (Norma), as I know she was having a
busy time and also with Jackpot (Gill) as we have not heard from them
in a while.Hello also to
Carolben. Please pop in and let us know you are doing alright.Hello to
Marymargarethope and Jacqueline1963, I hope you are managing alright
with the chemotherapy.Best wishes to
everyone.Sylvia xxxx
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Hello linali
(Lindsay),Thank you for your
very interesting, informative and detailed post. You are definitely
right about the reactions and attitude you can have to a diagnosis of
cancer or breast cancer in particular. You can decide to try to
ignore it and to go through your treatments with no information or
just the minimum you need to get through your treatment. I know that
back in 2005 when I was diagnosed, I sent off a detailed printed
sheet of questions for my breast cancer consultant surgeon to answer
before I went for my second consultation with her at the hospital in
Exeter. My first appointment there had been for a mammogram,
ultrasound, core biopsy and then a consultation to sum things up with
that consultant. Immediately after that I bought a book (a thick one)
by Dr Rosie Daniel entitled The Cancer Directory, written in 2005 so
right up to date at that time. I read it from cover to cover, made
notes and formed my questions. When I arrived for that second
consultation my breast cancer consultant came in with my printed
letter on which she had written the answers and went through them
with me. She said she was impressed with the scientific way in which
I had asked everything and said it was most unusual to ask all these
questions and that most of her patients ask nothing and just accepted
or rejected the treatment. From this you can see that I immediately
was a person who was going to be seeking as much information as I
could possibly find and was going to take command of what I did and
accept responsibility for it.As you can see,
Lindsay, like you, I am in the second option of having information
and making informed decisions. I agree that it is up to each of us to
decide what we are going to do, informed or uninformed. I was not
aware of this site at the time or into the internet, so I did not
have the support and comfort that groups like these have. However, I
did have the support and care of Hospiscare nurses.I was interested to
read about the opportunities that the centre in which you are
involved have been offering.I think the Men's
Cancer Day is a great idea, not to mention the five week series of
talks called Knowing Cancer. It is amazing that the two were offered
free. What a pity that the uptake was disappointing and I do hope the
situation will improve. I think men have to be pushed by the women in
their lives to take more care of themselves and to take advantage of
these opportunities. I think, perhaps, that female breast cancer has
been given more publicity and preventive possibilities than say
prostate cancer. I do think from the few men in my neighbourhood who
have spoken to me about their prostate cancer that they are beginning
to open up a bit. I did support the husband of a friend through his
prostate cancer and four other men around me have spoken to me of
theirs, so perhaps there is hope.It could also be
that cancer patients and cancer survivors need respite from talk of
cancer and just need to chill out for a bit and take breaks. I do
believe, however, that once you have a diagnosis of cancer, that you
somehow have to accept that your life has changed for ever and that
however normal your life becomes the cancer will somehow occupy some
corner of it.There is still a big
fear of cancer and I know that friends and family can have
unpredictable reactions to it. I do agree that cancer patients
probably often feel the need to move on and I can understand that.
Loads of people have been through this thread since September 2010,
but not many stay the course after they have gone through their
treatment and become a survivor. It is sad really because if we all
switched off these threads once we were alright ourselves, there
would be no support threads. I think the least people can do if they
do decide to move on is to post and tell us. I remember Bernie Ellen,
someone whom I really admired, decided to do this and posted to let
me know. I really appreciated that. If people just disappear, one
fears the worst. It would be nice if people who have posted in the
past, but have stopped, would post to say they are doing fine,
especially on the anniversaries of there diagnosis. It inspires,
motivates and gives hope, especially to those going through
treatment. I really appreciate the great input you give to this
thread.I was interested to
know that you had been on a mystery tour from the centre and went to
the Dail and then to the Arras, where you had tea with President
Higgins and his wife.I was really
interested to know that he is a staunch trade unionist and that you
had met him many times before when you were a union acivist. I am a
great believer in unions and think that for ordinary working people
they are the only protection against unscrupulous employers. It is a
pity the way a certain woman crushed the unions and destroyed people
and their communities.It would have been
very interesting if you could have spoken with the Minister for
Health at the Dail. Perhaps you will have another opportunity to do
this.I have to take a
break now but will continue later.Fond thoughts.
Sylvia xxxx
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Hello again Lindsay,
I was glad to know
that the centre is as busy as ever. You are very lucky to have this
and it is great that you are so involved with it. How much of your
time does it take? I was interested to read that another young woman
with triple negative receptor status visited your centre recently. I
was interested, also, to read that there are four of you now with
this receptor status. Do you all have the same kind of breast cancer?
The most common is invasive ductal carcinoma (IDC), which is what is
used for breast cancers of no specific kind. This represents about
85% of breast cancers in general. Breast cancers with triple negative
receptors are said to represent about 20% of breast cancers, but I do
wonder whether this is on the increase as there seem to be a lot of
young American women posting Calling all TNS to say they have breast
cancer with triple negative receptors. Have you any theories about
why? I think it may have something to do with young women developing
physically at a younger and younger age and thus having their periods
younger and younger. I also think diet rich in dairy products and
meat with growth hormones in them could play a part. In addition, the
birth control pill could be a factor, especially if young girls are
taking them at a younger and younger age and staying on them for
years. Children do not seem to remain children for very long. You
mentioned that the population of Clare is between 97,000 and 100,000,
so if one in three people is now supposed to be getting cancer, it
means that about 33,000 of them would be calculated to get cancer. If
we assume that half the population of that 100,000 are women then
that one in nine will get breast cancer, that means approximately
5,000 of that 50,000 will get breast cancer, so 1,000 of the 5,000
could get breast cancer with triple negative receptors. This is over
a lifetime of course.It is always good to
have news of your family because I know you are a very family person.
It is hard to believe that Oskar will be four in November.Your holiday to
America is fast approaching. This time next week you will probably be
there.I do hope all
continues to go well with Leigh. I find that clothes are all the same
now, with nothing being made in this country. Everything seems to be
leggings and fleeces. I like tailored trousers and jackets with nice
blouses but they are impossible to find. All the shops seem to be
selling the same things.As far as the
Scottish referendum goes, I feel that the Scots may have been had. I
read that if you take out the vote of the over 65s then the Yes vote
would have carried it with 54% to 46%. It would have been a complete
switch-around. I agree that Alex Salmond will be a great loss to the
SNP but I do admire Nicola Sturgeon and I think she will be a good
leader and will probably lead Scotland into another referendum. I
think the UK needs to be sorted out into a federal system and that we
need a devolved English parliament to deal with matters concerning
England and then a Federal Parliament to deal with national affairs.
It works in Canada and Germany, so why not here? We also need to do
something about the House of Lords.Today Raymond and I
have been having a rest from all the work we do as volunteers in the
running of our apartment complex. We have been catching up on chores
in our apartment and listening to some of our favourite programmes on
BBC Radio 4, Any Questions followed by Any Answers, and Dateline
London on the television. We like to keep up with all the news,
current affairs and conferences. We shall watch them all if we can.I hope all goes well
on September 29th at the pain clinic and that you will
have time to post and let us know before you go off on October 3rd.Thank you for all
the effort you make on the thread.Fond thoughts.
Sylvia xxxx
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Hello
everyone,I
have just been reading the autumn edition of Vita, the breast cancer
magazine. This magazine always makes interesting reading and remember
that it is free. You can also visit Vita on line at www.vita.org.uk.
This magazine is highly readable and has lots of letters and input
from breast cancer patients.Remember,
also, that October is breast cancer awareness month. This year
Vita@breastcancercare.org.uk
is highlighting the hidden effects of breast cancer so that the
public can get an insight into what the lives of people going through
cancer is like today.I
was particularly interested in the section entitled Real Lives with
the following accounts from various patients. These accounts are
entitled Expect the Unexpected, the Hardest Battle was Psychological
– an Emotional Struggle, as Time Goes By – 35 years on from
breast cancer, and Come Together – Secondary breast cancer support.
All of the above are well worth reading.Another
section that really interested me was the section entitled Healthy
Living. Under this section there was a very good article entitled
Coping with Pain, Long term pain solutions. I think this article
would be of interest to linali and Maryna8 in particular. The other
article is Vita goes Curling, one tests out a new activity.There
are many other sections, all of which are of interest to us cancer
patients.Under
the section Your Health, there is an article entitled 9 to 5, going
back to work after treatment.This
is very much a magazine of patient participation, with lots of
letters and advice. Very useful is the section, a question and answer
one, entitled Ask a breast Cancer Expert.There
is also a help line.Are
any of you doing anything in particular for October, Breast Cancer
Awareness Month?If
you want future issues of this magazine, call Vita on 0345 092 0808
or e-mail vita@breastcancercare.org.uk.I
saw that there have been coffee days around my area raising funds for
Macmillan. Has anyone participated?That
is about it for today. I suppose linali (Lindsay) is getting ready
for her trip to the US. I hope maryna8 (Mary) is feeling a lot better
and that Marymargarethope and Jacqueline1963 are coping with their
chemotherapy. How are you Sarahlou with your fifteen years since
diagnosis, pop in to say hello from time to time to inspire us.I
hope all of you are having a good week and that we shall hear
sometime from Normandee (Norma), Jackpot (Gill), Carolben, and
susanicking (Susan).Best
wishes to everyone.Sylvia
xxxx0 -
Hi Sylvia
Do you think the decision not to dna test you was wrong? Janette was about to be refused when I reminded her about her Great Aunt and I think that swung it. When the results came back she didn't have any genetic defect which put her mind at rest regarding the children.
Autumn has arrived here in Kilkyleagh but it is still mainly dry.
Michael
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Hello
Michael,I do
actually think that the decision not to do the DNA test was wrong,
but I suppose that, again, it was a question of money. I just had an
appointment with the genetics nurse and she was obviously sifting out
those she would refer to the genetics consultant and those she would
not. She just said that women with faulty genes get breast cancer at
a much younger age. All I can say is that I have now survived nine
years, three months and eleven days!!! The fact that my maternal
grandmother died of breast cancer did not seem to have any effect on
that nurse's decision.That
grandmother had nine children, two daughters and seven sons. The two
daughters had no cancer, but four of the sons had cancer, and died
from it. Of the other three sons, only one survived into old age and
had no cancer that we know of. Of the four sons who died of cancer,
one died of metastatic prostate cancer, one of throat cancer but he
also had prostate cancer, one of mesothelioma (from exposure to
asbestos) and I think he also had prostate cancer. Of my cousins from
that family, one of the male cousins, whose father had prostate
cancer, also developed prostate cancer. There are four of us female
cousins but so far I am the only one to have had breast cancer. There
seems to be a connection between breast cancer and prostate cancer in
that they are hormonal, but of course my breast cancer was not
hormonal.I
have not let not having had genetic testing bother me too much. I
have got on with my life but there is always the fear that the cancer
will come back.I
forgot to mention that I had four brothers, two older and two
younger. The eldest brother died as a child, but the next one down
died very quickly in 1995, age 56, of disseminated adeno-carcinoma,
primary unknown.Of
course we have to remember that we can inherit these faulty genes
through the males. Apparently, nobody yet knows how many genes there
are that are associated with an increased risk of breast cancer, but
according to the little book, Understanding Breast Cancer, so far
five major genes have been identified. This book also says that
before women can be offered a test you have to show that someone in
their family who has had a breast cancer has an abnormal gene.We
have to remember that cancer will not normally develop if the other
copy of the gene is working normally. We all have two copies of a
gene, one from the mother and one from the father.The
weather is still mild here but the days are getting shorter and the
leaves are beginning to fall. It is unbelievably dry and I feel quite
sad at the state of our lawns, which were a lovely green a month ago.
Do you have any projects to get you through autumn and winter?Take
care.Best
wishes.Sylvia
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Hello UK women! I have not vanished, just living life again as much as possible and busy! I have a friend in Munich with what seems to be metastatic HER2 positive BC, 4 of 7 nodes were positive, small spinal tumor as well. Sigh. Huge sigh. The chemo is Taxotere, Pertuzumab and Trastuzumab. Can anyone shed any light on the last two? Side effects, anything to do to ward off side effects?
She did her first chemo yesterday and so far so good. I suggested icing fingers and toes from now on. Why don't the hospitals tell patients this? I had one friend who lost 4 nails on each foot during DOC and not all have come back...and horrible finger pain as well. I don't get it.....
Thanks for any help.
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Hello
Susan,It
was so lovely to hear from you and to know that you are getting on
with your life. That is the best way to go but please pop in when you
can. I keep reading poor reports on cancer care in the UK, so it is
good to hear from you in Germany as I keep reading cancer care is
good there.I
was interested to read about your friend and about what appears to be
metastatic HER2 positive breast cancer. I do hope she is going to be
alright.The
chemotherapy that you mentioned was very familiar to me because the
three drugs are exactly what my friend and neighbour was having for
her treatment of metastatic HER2+ breast cancer. In fact, from our
conversations she was triple positive. She had gone through primary
breast cancer and had had the usual, chemotherapy, surgery and
radiotherapy, together with the drug trastuzumab (Herceptin). She was
on injections of trastuzumab after the initial treatment. She was in
remission for a couple of years and then she discovered that the
cancer had spread. It had gone to her spine and then to her liver and
lungs. She told me that she was then on docetaxel (Taxotere),
pertuzumab (Perjeta) and trastuzumab (Herceptin). The last two drugs
are known as monoclonal antibodies that target HER1, HER2 and HER3.
She survived about two years but then died quite suddenly and
quickly. She went into hospital to have fluid removed from her lungs,
but it could not be done because of poor blood counts and she died
within the week.I
have read that the combination of trastuzumab and pertuzumab is a lot
more effective than either drug alone.I do
remember that at one point she was also having lapatinib (Tyverb), a
new drug that can be taken in tablet form. From what I have read it
is used when trastuzumab has stopped working.You
probably know that HER2+ tumours are fast growing and aggressive and
the outcome was not very optimistic before trastuzumab was on the
market. I remember women in the UK going to court in order to get it
and they always won. It is an expensive drug.You
asked about side effects. I know that trastuzumab can affect the
heart, especially when it is combined with anthracycline chemotherapy
(= doxorubicin and epirubicin). You are given a heart scan before and
during treatment to see whether the heart has been affected and
whether treatment needs to be discontinued for a while. According to
my reading, the heart function usually picks up to allow completion
of the whole course.Sometimes
patients can have an allergic reaction to trastuzumab. If this
happens, it usually happens shortly after staring the injection and
can be treated. Apparently there are very few side effects, according
to what I have read. It is a targeted therapy and is said to be safe
and effective.I
wonder about that if it causes heart problems!I
keep reading about how calorie restriction or fasting through your
chemotherapy helps you to lessen the side effects and for the
treatment to be more successful. Do you know anything about this?I do
wonder as well why hospitals do not mention icing fingers and toes,
during docetaxel. All I know is that my oncologist was against my
wearing an ice cap during chemotherapy. She said she was afraid of
infection. I know that patients do lose toenails or have discoloured
nails as a result of docetaxel and it is probably the same for
paclitaxel (Taxol).I
hope this helps and that your friend will come through this. I know
that triple positive and triple negative breast cancers are both
classed as the most aggressive. I remember my breast cancer nurse
telling me I was lucky not to be HER2+. That was back in 2005/6 when
women were fighting for Herceptin.Here
in the UK we are having very mild weather, too mild for this time of
year. We are desperate for rain in the south west and the grass has
really suffered. Exmouth is pretty quiet as a lot of the tourists
have gone home, but we do get a lot of retired people coming in on
coaches. The seagulls are much quieter when it is not so busy here.I am
busy reading the most recent editions of the magazines to which I
subscribe. They all seem to have arrived together this time. I do not
know if you catch up on all the posts, but if you do I posted a lot
of details about the free Breast Cancer Care magazine, Vita.
Yesterday I received the latest edition of icon magazine (Integrative
Cancer and Oncology News). It is the first one I have received this
year. It is absolutely full of in-depth articles about breast cancer.
I shall give more details later. I also received the October edition
of What Doctors Don't Tell You, so I have quite a lot of reading to
do.Please
keep in touch with us all.Fond
thoughts.Sylvia
xxxx0 -
Good evening Sylvia
With so many males in your family having had cancer, particuarly prostrate cancer it seems likely that there could be a
genetic link. Janette was worried about any genetic defect because of her children, so no doubt she was relieved to hear that there was no faulty genes.
Thursday was a deluge of rain all day but yesterday wad sunny but chilly and today the winds have been building all day. I haven't looked at the forecast for the rest of the week as I am flying to Girona tomorrow afternoon and on Thursday I fly back to London for a couple of days in Brentwood and the back to Belfast on Saturday.
The big news in Brentwood is that the high stret is getting yet another pub, this time a Wetherspoons.
Have a good week all!
Michael
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Hello
Michael,It
was nice to hear from you.I
can understand Janette's concern about any genetic defects because of
her children. I do not have any children so I do no have to worry on
that score. I forgot to say that when I had the interview with the
genetic nurse, she did take a blood sample for my DNA which is stored
at the hospital in Exeter in case it is needed in the future. My
deceased older brother has one daughter, who is now fifty, but as far
as I know is fine. Of the two younger brothers, the youngest has no
children, but the other has three daughters. If they should develop
breast cancer, especially while they are younger women, my DNA blood
sample will come into play if I get in touch with the hospital. My
brother was absolutely against anything being said to them. All they
knew was I had been diagnosed with breast cancer.I
also remember that, when I went for my first chemotherapy, while I
was waiting, I was asked if I was happy to fill in some information
forms with their research nurse. I did this willingly and it was
there that there were questions about your age when your periods
began, your age at menopause, whether you had had any children, your
age when you had had your children. From this I learned that having
your periods while still very young was not good, that having a late
menopause was not good, not having had children was not good or
having had your children fairly late in life. Apparently these are
all possible risk factors in the development of breast cancer, along
with being on the birth control pill. Of course, as was explained to
me, risk factors do not mean they cause the cancer. This is all to do
with exposure to oestrogen. I do remember at one point my oncologist
telling me that although my tumour had negative receptors, this did
not mean that it started as such, as tumours mutate.There
were 18 of us cousins and now there are 14 as far as I know. Of
these, only four of us are females and the four dead cousins are all males. Of these, one of my brothers died of cancer, one had prostate cancer but this was not the cause of death.It
looks as though we are in for a rainy period as well in Devon, after
a very dry September. We have had a lot of rain this weekend. This
morning we woke up to torrential rain and high winds, but this
afternoon it is dry, sunny and very, very calm.I do
hope you have a good time in Girona if you are there for a few days
holiday.
Many years ago I visited most of Spain when I was working in
Morocco. I really liked it there.Raymond
and I are always interested in news about the places we knew and used
to frequent when we lived there. I suppose Brentwood will have
changed beyond recognition. There were already a lot of pubs and
clubs along the High Street when we last visited, which must be
several years ago. Is the library still there? We used to go to a
dentist which was the other way along the High Street and on the
opposite side to the big strange furniture store that used to be
there on the corner and specialised in custom made furniture. It
started to have shops closing down when we were there and we started
going to Chelmsford, which was my favourite town, along with Exeter,
as it was in the 70's. I now cannot stand Exeter and wonder what
Chelmsford is like these days. Raymond and I spent a lot of happy
days there.I
was interested to know that yet another pub is moving onto the High
Street. I am sure Wetherspoons will be very popular. I do not think
other pubs can compete with the prices. There is a Wetherspoons in
Exmouth and two in Exeter, plus a Lloyds, which a cousin of mine
tells me is Wetherspoons with music. There is a big Wetherspoons in
Exeter that used to be the Imperial Hotel. It is huge and one part of
it used to be the ballroom. It is within a short walking distance of
Exeter University, which is now huge, and the Exeter College of Adult
and Further Education, so there is no shortage of customers!!Have
a safe journey and look forward to hearing from you when you get
back.Best
wishes.Sylvia
0 -
Hello
susaninicking (Susan),I
hope you managed to read the information I posted about treatment for
HER2+ breast cancer.After
posting I started reading my icon magazine and found something of
interest on page 51, under the section beginning on page 48, entitled
Cancer Watch, The Latest Cancer Research From Around the World. On
page 51 there was an interesting article entitled And Another Drug
For HER2 Cancers, and it was about HER2+. Apart from the drugs you
mentioned, there was also another one, T-DM1 (Kadcycla). This caught
my attention because it was in the news over here and was not going
to be available on the NHS. It cost £35,000 for a year's supply. I
do not know whether my friend had had it. You will probably find
information on line.I
hope this helps.Thinking
of you.Sylvia
xxxx0 -
Hello
everyone,I
have just finished reading icon magazine (integrative cancer and
oncology news) and it is packed with useful information. If you do
not receive this magazine I am sure you can find the information at
the relevant website, www.canceractive.com. I shall refer to the
relevant pages in the magazine.Page
12 – Sugar consumption – the not-so sweet facts about sugar.Page
16 – Breast cancer – a growing problem for younger women.Page
26 – Cancer and milk – time to look at the facts.Page
28 – Young breast cancer – The Haven and Maggies ensure support
is at hand.Page
34 – Centrefold spread – Twelve foods that help fight cancer.Page
36 – Environmental toxins and cancer risk.Page
42 – Nutrichef – A diet to help breast cancer.Page
44 – How foods and drugs interact.Page
46 – Fight cancer with light daily exercise.Page
48 – Cancer watch – The very latest cancer research from around
the world. I found this section of particular interest and it has a
vast amount of information. It goes from page 48 to page 57. On page
54 there is a paragraph entitled 'Vitamin D shows promise with triple
negative breast cancer'. I shall try to post more details of this
section as it is, of course, of obvious interest, especially to those
with faulty BRCA1 genes.Page
58 – Special report – Aspirin benefits confirmed in the fight
against cancer.Page
60 – Chemicals of concern – How many do you use? The subtitle is
'15 ingredients to evict from your bathroom and toilet bag'.Page
62 – Twelve of the best supplements to help you fight against
cancer.Page
64 – Cancer Active news.Page
66 – Phytochemicals – further evidence for their anti-cancer
benefit.I do
hope that some of you will take the time to try to read the details
of all this. We all know that when we are diagnosed with breast
cancer and are going through our treatment of surgery, chemotherapy
and radiotherapy, that we have to help ourselves to get through this
and then do what we can in our daily lives to prevent it coming back,
and the important ways to do this are to eat for maximum good
nutrition, keep physically active and keep as many chemicals as we
can at bay.I
hope everyone is having a good week and that those going through
treatment are not doing too badly.Best
wishes to all.Sylvia
xxxx0 -
Hello Sylvia and all,
I went to the website you posted above, there is so much info there; a person could spend hours and not get through it all. Very informative.
Well, I have been through physical therapy, MRIs, an EMG and various docs. They have deduced I have degenerative disc disease in my cervical spine and my lumbar spine. The lumbar spine will need to be retested soon, there was a spot that is either a new bone spur or a possible metastastic something. I prefer to think it's a new bone spur, of course! I have a pinched nerve in my neck that causes considerable pain and headache at times. I also have a partially torn rotator cuff, and neuropathy from the chemo. The EMG showed that my carpal tunnel is not bad enough for surgery, that doc thinks my discomfort is from neuropathy caused by the chemo. I have deduced that I have neuropathy not only in my hands and feet, but also in my arms, and legs and I'm not ruling out other body parts! I will also add that it is not as bad as it was, so I have hope that as time goes by it will get less and less. Fingers crossed! I have another weird problem that has cropped up over the last month. I have nausea about every other day. I did not have nausea during chemo, and could eat whatever I wanted. Now I have to be careful what I eat, and the only explanation I have come up with is that I have a lot of sinus drainage. I am back on my sinus medication to see if that makes a difference, otherwise I don't know.
I am going to start acupuncture next month. Actually, the doc does both acupuncture and chiropractic. I am going to tell him all my problems and see what he thinks I need. And I will not let him put needles into my mastectomy-side arm.
I talked briefly with a lady in one of the waiting rooms I was in, she was wearing a pink teeshirt. I asked if she had breast cancer, and told her I did too. She had the estrogen-receptive type, and hers came back after 14 years. It is now in her liver and bones. I have heard that the docs tell the E+ ladies that they are in the clear after 20 years, I guess that is true. She is on oral medication, I hope it does her some good.
My husband is hanging in there, his kidney numbers actually came up a little bit on his blood test, so he was glad to see that. Puts off that dialysis some more.
We are in between rain storms today, I think we get one day of dryness. It has been a wet fall here.
I will also toss in here that I did ice my hands and feet for the last 3 of my Taxotere treatments. I still have neuropathy, and seem to have it everywhere. But it's possible the damage was done during the first treatment, because I felt it then. Who knows?
I hope all are well, and I hope those going through treatment are being blessed with good results.
Best wishes!
Mary (maryna8)
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Hello
maryna8 (Mary),I
was so glad to know that you had taken the trouble to have a look at
the website that I had posted. I was so glad also to know that you
had found it very informative. There is a whole lot of information on
that website and I did spend a lot of time reading through every page
of icon magazine and then went through it a second time. When this
thread first started we often used to say that information was power
and I still believe that. I know there is a lot of information out
there and sometimes you think it is impossible to retain, but it is
surprising how much information does sink in and will come to the
fore when you need it. I really appreciate your having taken the
trouble to let me know that you have read the information because
that is the only way I have of knowing that the time I spent on it
all and relaying it to everyone was worthwhile.Thank
you for letting us know how you have been getting on with all your
various check-ups. At least you know what they have deduced from all
the tests. What can they do about degenerative disc disease in your
cervical spine and lumber spine. Let us hope that the spot on your
lumber spine is a new bone spur and not anything to do with
metastases.People
tell me that a pinched nerve in the neck causes really bad pain so I
do send you all my sympathy.Have
you been told whether anything can be done to ease the neuropathy
induced by chemotherapy? Has the oncologist told you that it is
neuropathy? Have you seen a podiatrist about the neuropathy in the
feet? I was glad to know that it is not as bad as it was. I am very
aware of the neuropathy in my feet, even after all these years. I
have absolutely no problem anywhere else in my body with neuropathy.I
was sorry to read that you now have some nausea. What do the doctors
have to say about all this? Have you pinpointed any foods in
particular that make you feel nauseous? Could it be due to anxiety? I
know you have a lot with which to deal. It will be interesting to
know if the sinus medication stops the nausea.Please
let us know how you get on with acupuncture and chiropractic
treatment next month.I
was interested to read about your conversation with a woman wearing a
pink tee-shirt and who had had breast cancer that was hormonal
positive, and had come back after fourteen years. It is useful to
hear about these cases because it makes those of us with non-hormonal
receptor breast cancer realise that no matter what the cancer is,
there are no guarantees.I do
not think we can ever say that we are in the clear and I did not
think that oncologists would ever say this, because they just do not
know. I think it can come back any time. All we can be told during
our various check-ups is that there is no visible evidence. We have
to make sure that we do everything we can in the way of our lifestyle
to prevent it coming back and just hope for the best.That
lady you met has probably got tough times to face with the cancer now
being in her liver and bones. At least she is able to be given oral
medication so let us hope this will give her many more years of life.I
was glad to read that your husband is doing a bit better and that he
has not had to go on dialysis.I
was interested to read that you did in fact ice your hands and feet
for the last three of your docetaxel (Taxotere) treatment, so I
suppose the damage must have been done during the first treatment.
How is the icing of the feet and hands actually done? It does sound
like something very uncomfortable as you sit having the chemotherapy
done.I
actually only became aware that the soles of my feet and my toes did
not feel right until I was going through radiotherapy.It
looks as though summer has really disappeared here in Exmouth.
September was really dry but October has been very wet and the grass
is now a beautiful deep green. It is dark by 7 pm so the nights are
now long.Take
care of yourself, Mary and keep looking forward.I
was listening to a programme on the French radio this morning and
there was a doctor speaking about how cancer will become a chronic
disease within the next fifteen years. Only time will tell.Sending
you fond thoughts.Sylvia
xxxx0 -
Hey Sylvia,
Yes, there are a lot of interesting articles in ICON. I googled it too, and found a lot of back issues. I read a story of a woman who developed breast cancer at 50, and battled it with naturopathic and holistic alternative methods. She claims to have finally gotten rid of it, but there the story ends. It would be interesting to know what happened down the line. I just don't think I would be brave or patient enough to try those methods alone without the standard care.
They also talk about stress as related to cancer, and I find that interesting. I believe that's a big part of it. I know I determined to cut down stress in my life wherever possible. but I haven't had a lot of luck with that. I have had so many pain issues since chemo that it has only added to the stress in my opinion.
Also on cutting down on the chemicals in one's life; that is difficult. I looked at the various body creams and moisturizers I use on a daily basis and saw that most of them contained one or more of the offending chemicals, the parabens especially. Bug sprays and weed sprays are everywhere here, when we're in a rainy period it gets rather jungly, bugs and weeds tend to take over. It's all difficult, but very interesting. Thanks for sharing.
As to the disc disease in my back, there's not a lot to be done. If it gets bad enough, they suggest surgery. I am not there yet. Perhaps the acupuncture will help. Other than that, it's just pain control with anti-inflammatory pill. I think that it, along with the pinched nerves, will be worse at some times than others, just a chronic condition. As to the neuropathy, it is some better than it was, and I don't think anything else can be done about it. I was given Neurontin to take twice a day, but I haven't taken it. I wanted to be aware of the feelings to know if it was getting better or not. So when the pain was bad, I would take pain meds. I haven't had to take any of that in more than 2 weeks. I take that as a positive sign. My family doc and the oncologist both thought much of my pain was nerve pain from the beginning, but I wanted to make sure it wasn't just orthopedic. What I have found out is that it is both! That chemo is some powerful stuff. I think if I was told I needed to do another regimen of it I would have to refuse. Let's hope that day doesn't come, but you are right, there are no guarantees.
The icing of my feet I did with special slippers that I ordered just for that purpose. You put them in your freezer and then wear them with a protective lining while the chemo drugs are going in. They are quite expensive so I didn't order the gloves. I bought long ice packs and wrapped them around my hands during the infusion. I guess I should have had my whole body immersed in ice water! But then it would have defeated the purpose, I guess. The idea is that when the blood flow is slowed because of cold, not as much of the drug goes into the area of the body that is iced. Surprisingly, it was not uncomfortable, I guess because of the protective covers.
I have to go for now, I have my last physical therapy session today. I felt sorry for my therapist, I was in so much pain through most of it she was not able to do much with me, I think she was frustrated. I think as I get better, I may consider a trainer at the Healthplex, to work with me to build up my strength. We will see.
Have a wonderful day, Sylvia!
Best wishes to all,
Mary
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Hi Sylvia, I found this site yesterday and was interested to follow your messages which sound full of hope and very sensible! I was diagnosed in December 2013 and finished my chemo at the end of July this year. I am doing ok, went back to work 2 weeks ago which i do find tiring even though I am having a phased return. I was 60 years old in July and my lovely partner died a few months before my diagnosis. It would be nice to share info and stories with other TNBC ladies in the UK and to share our experiences. After all we are the 'special bunch' being only about 20% of the general BC cases, Sue x
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Hello
Sue,I
was so glad to read your post and to know that you had found this
thread and I would like to give you a warm welcome. This is a place
where none of us has chosen to be but we can support you here.I do
not know whether you have just read the recent posts or whether you
have started back at the beginning, but there are lots of interesting
posts here and lots of information that may help you.I do
hope that your treatment so far has not been too bad for you. How did
the chemotherapy go? It is usually the most challenging for all of
the women that have gone through this thread during the past four
years. How did the radiotherapy go? How many weeks of it did you
have?I
was glad to know that you are doing alright after finishing after
finishing treatment, which cannot have finished too long ago. You do
need to take it easy and give yourself time to recover. It is a good
idea to have a phased return to work and I am not surprised that you
are feeling tired. Are you doing a very stressful job?What
a terrible time you have been through with your partner having died a
few months before your diagnosis. If you need to talk about it on
here, please do.I do
hope you had a lot of support to get you through all of this and that
you have on-going support from family and friends. A lot of women
have gone through this thread and their stories and experiences are
all here for you to read.Have
you had any support from local groups or at your hospital? A cancer
journey is not one to take on your own.You
are quite right about the TNBC women being a special group and we are
in the minority when it comes to breast cancer cases.At
the moment there are two women going through chemotherapy who have
been regular posters, but have not posted in a few weeks. They are
both in the UK and are marymargarethope, who had a baby while on
treatment, and Jacqueline1963. I hope they will post soon to let us
know how they are.Let
us know if we can help in any way and keep looking forward.Fond
thoughts.Sylvia
xxxx0 -
Hello
Mary,I
agree with you that icon has many interesting articles and it is so
useful to have it on line.I
was fortunate to come across it at the hospital when I was first
diagnosed, so I started reading it regularly after that and then
subscribed to it through making a donation. There has only been one
magazine this year but it is packed full of information. I shall
check on line to see if there is much difference.I am
sure there are people out there who do go into remission without
orthodox treatment, but, like you, I do not know if I would have the
courage to go that route, but more and more I do believe, like many
hospitals, so I am told, that the way forward is a mixture of
orthodox, complementary and alternative. I certainly took all
different things through my treatment.Like
you, I am very interested in stress and cancer. We have no idea what
happens inside our body when we have negative stress but it obviously
turns our hormones upside down and we get a lot of cortisol building
up which is not good for us. Since diagnosis I have learnt to read my
body and can feel the changes in my body if I feel stressed, anxious,
angry or upset. It is very difficult to cut stress out of your life
but we need to try as we have only one life to live and we have to
learn not to take it too seriously.I
can understand the level of stress that the pain you suffer must
bring on and all you can do is to try to relax. Of course you have
the added concern over your husband's health. We have to find ways to
switch off and to try to laugh as much as we can.At
the moment I am reading “The Secret Source of Your Good Health”,
the latest book by Chris Woollams MA (Oxon) and it is truly
interesting. It is all about the importance of all the healthy
bacteria that we have in the large intestine and how lack of these
bacteria can have very adverse effects on our health. I shall write
more as I read. One of the main messages is the importance of getting
probiotics into your diet. Fermented foods are very important. Foods
such as live culture yoghurt, (but NOT from dairy).I do
agree with you that probably the most difficult part of trying to
lead a healthy lifestyle and try to prevent cancer coming or
returning is all the chemicals in our industrial world. Our household
products, gardening products, cosmetics and toiletries are on the
whole lethal and we have to try to find healthier products. I am very
concerned about the widespread use of parabens and variations of it
and sodium laurel sulphate (SLS) and various versions of it. I have
found some healthy shampoos made by Mistry. It would be good if
anyone is using healthier products post to let us know.I
was very interested to learn about the ice slippers.We
need to know about all these tips to help others get through their
treatment.I
hope you have a good week, Mary and best wishes for a good week to
all of our posters and viewers. Please pop in and let us know you are
OK.Fond
thoughts.Sylvia
xxxx0 -
Ladies, while I am not a part of this group, I came across this sponsored link on my Facebook page for a trial for metastatic triple negative BC women. It is a study of an investigational drug. I don't know if anyone would be interested but wanted to share it. Linky Good luck to all of you! HUGS!
0 -
Hi Sylvia and thank you so much for your prompt and warm reply. I finished my chemo about 10 or 11 weeks ago. I did find it tough as I had 6 months and 12 chemos altogether. I had Epi-CMF (second generation)chemo and was worried that i did not have a taxane. My oncologist told me this was the preferred chemo for node negative triple neg breast cancer, but i still worry...Do you have any knowledge Sylvia on the chemos that triple negative women should get?
The actual chemo was not too bad as i never vomited or had any neuropathy as some of the ladies who have had tax get. However i was very 'off coulour' with little appetite and generally felt rubbish. The upside was i lost about 10 pounds which i have promptly put back on!! I know that maintaining a healthy weight is important for us triple negs (and all BC) but I do feel low at times and food tends to be my comfort. I have ongoing kidney problems which i am seeing a urologist for and so am in daily discomfort with that and what with still grieving for my partner and other family difficulties it is hard to see the positives. HOWEVER, I am digging myself out of my little worry hole slowly but surely with the support of my lovely BC nurse and a therapist from the Macmillan centre. I also had 20 rads in June during my chemo. These were 15 plus 5 boosters and not too bad, my skin held up well.
Do you have any hints and tips to get my diet on track and prevent recurrence? i take flax seed a few times a week and try and eat healthily and avoid too much sugar and alcohol but feel so guilty if i have a tipple. How do you manage Sylvia? and others of course, any tips or thoughts gratefully received x Thanks for reading this and hope to hear from you soon, Sue x
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hi Sylvia
I know I've been missing in action for a while I went on a lovely two week holiday to Cyprus but have had a few problems since I've been back, the day after I came back I hemorrhaged pretty badly and was sent to the woman's hospital and I have had a number of tests to try to find the cause
The ultrasound picked up two fibroids and surgery has been arranged to have them removed for the 27th but the thing that has worried me most is I had a ca-125 cancer marker test done that detects cancer in the ovaries or surrounding area with a normal range being 35 or below, mine has just come back at 229 today so I'm very worried right now and I'm going to phone my onc in the morning
The surgery is still going ahead to remove the fibroids but I have quite a bit of pain around my ovaries and the sudden hemorrhage and now the elevated ca-125 results has me really worried, there just seems no end to this right now
Has anyone else had this test before and had an elevated result? I've been googling (I know I shouldn't) and it seems results of over 200 indicate malignancy, the only hope I'm clinging to right now is she said fibroids can also give an elevated result but never said how high....she also kept saying how sorry she was which didn't help because that made me think she was convinced it was cancer but didn't want to say so, anyway I'll let you know what my onc says and what the next step is to try and find the cause of all this
Take care
Gill
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Jackpot - so sorry to hear about your unfortunate circumstances. Such a big worry for you - fortunately you got your holiday in. You will be in thoughts and prayers in the next while as your get this sorted out. I don't know anything about the c125 markers since my MO doesn't do markers of any kind on me - hopefully someone else will be able to shed some light on the significance of a high results. Thinking of you. Take great care of yourself and let us know how your are doing.
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Hello
PontiacPeggyThank
you so much for your kindness in posting the link for us. I shall
certainly have a look at it as we should all know about any trials
and new investigational drugs. Thank you for sharing this information
with us.I
was looking at your details and saw that you have the hormonal
positive receptors but negative for HER2. How are you now, post
treatment? Have you had any side effects from the Arimidex, as I know
that it can cause trouble with the bones?It
is good if we can come together in these different forums and share
information, no matter what receptors we have.What
does oncotype 13 mean?Keep
well and take care.Fond
thoughtsSylvia
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Hello
Suewirral,I
know that a lot of women find chemotherapy tough and you had a lot of
it in six months. I had eight sessions in six months and went every
three weeks. I had the chemotherapy before surgery because I had a
large tumour and the chemotherapy was done to shrink it a bit to make
the surgery easier. I had epirubicin and cyclophosphamide together
for four sessions and then four sessions of docetaxel (Taxotere).The
regimen you had , Epi-CMF, is one of those that is commonly used, but
I must admit that when I first read your details I was surprised that
there was no taxane (paclitaxel – Taxol) or (docetaxel –
Taxotere). I understand that the taxanes are very effective against
breast cancer with triple negative receptors. However, each patient's
breast cancer is individual and there should be a reason why your
oncologist chose that particular regimen for you. The taxanes are
more recent than the others. There are about seven commonly used
combinations and others.You
could ask your oncologist why you did not have a taxane. I do know
that I have neuropathy in the feet from Taxotere and I think this is
quite common. My oncologist told me it had been caused by the
Taxotere. Maryna8 also has neuropathy. My oncologist also told me
that she had chosen Taxotere rather than Taxol because Taxol was
harsher on the heart.Your
chemotherapy treatment is quite recent so you do need to take it easy
and give yourself time to recover.As
you recover you can gradually deal with other problems. If you want
to lose some weight do it gradually as you get your strength back.
You could join a group to do this if you think it might make it
easier. I have a friend who is a volunteer leader in a Weight
Watchers group and she says it is a very successful way of losing
weight.With
all that has happened I can understand that you may be comfort
eating. You need to eat healthy and energising snacks, such as a few
nuts or some fruit. It is important to stay away from junk food. We
have had many discussions on here about eating healthily. I tend to
eat fruit and vegetables, some wild fish (mainly oily) and I have
fresh unsweetened soy milk enriched with calcium or unsweetened
almond milk enriched with calcium, plenty of fermented foods, such as
plain soy yoghurt with live cultures. I also have nuts, seeds, pulses
and beans, some grains, a little wholemeal bread, some organic eggs
and a few cold water prawns. I steer clear of meat, poultry, dairy
products, alcohol, fruit juices and processed foods.I
keep very active, mentally and physically, but do not go overboard
with exercise except walking, gardening and housework.The
hardest part of trying to keep cancer at bay is keeping control of
one's environment inside and outside the home. I am shocked at all
the chemicals in everyday products, so try to use a minimum of them
and have switched to natural shampoos, skin products etc.I do
hope you will be able to solve your ongoing kidney problems with your
urologist, because daily discomfort in addition to recovering from
breast cancer treatment is quite a lot of stress. Of course, on top
of that, you are grieving for your partner and that is a long slow
recovery. Have you been for any bereavement counselling, as it
sometimes helps to talk to someone and again you will meet other
people. There has been a lot of grief in the apartment complex where
I live and I can see how people are suffering. We have one elderly
lady whose husband died last year and now her daughter died recently
from triple positive breast cancer. She is very broken up.I do
hope you can solve your family difficulties as they can wear you
down. Just try to deal with things slowly and one at a time. I am
glad to know that at least you have the support of a breast cancer
nurse and a therapist from the Macmillan centre.You
had a lot of radiotherapy. I had 15 rads including boosters, and like
you my skin held up so I was glad about that.Try
not to worry about recurrence. Focus on the fact that you have come
through all of this and that slowly you will recover. Eating flax
seeds is good. Avoiding sugar is good as well. It has become the
villain. You will see from what I have already said about my diet
what I do.I
hope this post will help you and I hope others will post in to
support and comfort you. We do have a lot of lovely women on the
thread and I hope we shall hear from them now that summer has ended.
We have a very nice man as well, Michael, who has been through
non-Hodgkins lymphoma. His wife, Janette, died of metastatic triple
negative breast cancer over two years ago and he has set up a Janette
Collins Foundation in her name. You might like to have a look at it
as it has lots of information on it.Thinking
of you and sending all my sympathy to you. Please post as much as you
like if it helps to comfort and help you.Fond
thoughts.Sylvia
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